How many more minutes...

Sunday, November 13, 2011

Wow, I can't believe that it's been two months since my last post and less than two weeks until Thanksgiving and Advent. We are doing well at the Gonzalez' household, my baby turned four on 11-11-11, so we are recovering from all the partying.

So Claire is now being weaned off of her braces. Every week she gets to go braces-free for an extra hour until she doesn't have to wear them at all during the day. It's hard to believe that we have come this far. She has "normal" range of motion and her PT is working on keeping her from regressing. Her therapist is amazing and there are no words to express the gratitude that I have for all the work she has invested in my daughter. Today is the first day of basketball practice and needless to say, both Claire and I are very excited.

We also have reached the end of the first marking period. Claire did very well except that she received a C in handwriting. This was expected but her OT is working diligently on getting her to stay between the lines and taking her time. During the conference with her teacher, Miss Giancola expressed that Claire is anxious to move on the cursive but that she needs to slow down. Miss G, with tears in her eyes, also thanked Michael and I on how well we have worked on getting Claire all the help that she needs. It is very hard for me to hear this when I would go to the ends of the earth for either of my girls. A friend of mine, whose son also has a learning disability, asked me if I thought that ignoring the needs of a child by not getting them the help they need is child abuse? I answered with an emphatic yes. We watched some videos from last Christmas and it is amazing how much Claire has progressed in a year but it doesn't surprise me since she has worked so hard. A blogger that I subscribe to posted this article and it's content doesn't surprise me at all.http://www.emaxhealth.com/1506/autistic-persons-have-strong-abilities-are-underestimated

I can't imagine that I will blog before Thanksgiving so I hope that you all have a wonderful holiday. This will be our first gluten-free Thanksgiving but I'm sure it will be a wonderful feast, compliments to Chef Dad. I will be running a 4.4 mile Turkey Trot in the morning benefiting our local Autism Speaks. Cheers, love, and peace!!

Sunday, September 18, 2011

Yay for braces!!! We have finally taken a bath without waterproof bags and awkward feet propping and no more stinky toes!!! And the greatest of news is that her range of motion is normal!!! Now the task of keeping it that way...

Wow, did I ever think in my life that I would cheer for my daughter to receive braces. I am so happy to be done with those big, bulky casts. And as you can tell from the picture, her braces came in pretty colors. The dark blue space braces on the left are her to sleep in at night. They fully cover her feet bottoms so that her leg is fully flexed through the night, almost like a boot. She is required to wear this set until she grows out of them. The pretty pink heart braces on the right are for the day. The bottoms only go to the middle of her feet to allow for maneuverability with sneakers. Right now they are a solid brace but when she gets a better range of motion, they will hinge the braces at the ankle to give her even more movement. She will wear these braces everyday for a minimum of 2 months. After we had the braces fitted, we went to Dick's Sporting Goods for some shoe shopping because we had to buy a pair of sneakers that were big enough to fit the braces in. She got a cool pair of Saucony in a size 6!!!! Her physical therapist told us that their sneaker preference for kids are New Balance and Saucony. They tend to be deeper and give kids more ankle support, whereas other shoes like Nike or Reebok tend to be more shallow. Since I have started running, Saucony has been my sneaker of choice, so I tend to be a little biased. She is doing really well and is quite happy to air out her legs. I can't brag enough about how wonderful she was during the 4 weeks of casting. Never once did she complain or need to scratch an unreachable place. She got up every morning and slowly walked those stairs to her second grade class, never once asking to stay home. She even walked the two blocks with her classmates to mass on Fridays even though she could have gotten a ride with Sister Joanne. I can't tell you how much I missed those legs. All weekend I just kept massaging her calves like her body was missing some parts and they reappeared.

Caution...I am going to vent here, so you can skip if you rather not read the bitching...

I can not tell you the stares that we have received in the past month. I have lived with stares from people every since she was suppose to be talking. I can't believe how my sweet, huge-hearted daughter is treated by some people. I know that she loves to talk and most of the time no one can understand her but how is it that people can be so blatantly rude. I have had people stop and stare, I mean blatantly stare, at her trying to walk with two huge, bright-colored casts. Those people should have been giving her a standing fucking ovation. Can you imagine having concrete blocks on your feet and trying to walk and sleep in them?? I just don't understand how it is that in the year 2011, we show such little compassion for those that are different that us. And what does that mean anyways, being different or special? I think I am different from others as they are different from me. My heart is so sad that my daughter will always be treated like someone "special". I can't wait until Claire climbs that supposedly unreachable mountain and gives all those assholes the middle finger.

Tuesday, September 13, 2011

My mom was having tremendous troubles with her stomach last year. At one point, when I went to drop off Lily, I found in her tears, doubled over in pain. Shortly after, she had emergency gallbladder surgery but it didn't fix all her problems. Last December, after her surgery, her primary care doctor called her to tell her she had tested positive for Celiac Sprue. What the hell was that, we all asked?!? She had to go completely gluten free.

January of this year, I had an appointment with Dr. Scott Faber at the Children's Institute. Dr. Faber is a controversial neurodevelopmental pediatrician. He is controversial because he believes that a strict diet of no wheat, no dairy, no soy is a way to control symptoms of autism. I personally like and respect Dr. Faber but there are many who don't. I worked with him and his collaborators at Duquesne University on an autism grant that put autistic kids in ultra-clean rooms to level out the toxins in their bodies. Our lab ran an assay which measured the mutation frequency in the blood when there is an environmental exposure, it's a good indicator of how much you were exposed. My lab actually saw the frequency increase by 10 and 100 fold of two autistic children, indication of a benzene exposure. So I had dinner with Dr. Faber once and he is truly a wonderful, caring man. When I took Claire to be evaluated by him, the first thing that he asked was if any first degree relatives had an autoimmune disorder. I mentioned my mom's diagnosis but did not think anything of it. He answered with "really?!?". Claire was diagnosed a month later.

Our lives have been turned upside down in the past two years. I never imagined that I would be a mother to one of "those" children who had "allergies". But this is beyond a wheat allergy. Left untreated, Celiac disease can cause malnutrition, anemia, infertility and potentially cancer. What makes me the most sad is that Claire was asymptomatic, she never complained about her stomach and she definitely did not have a growing problem (most celiac kids have stunted growth or are short statured). With this diet we have seen remarkable improvement in her speech and hand writing. She is still tired all the time and is quite clumsy (though the casts don't help). We just received her results from her six month GI check up and her transglutaminase levels decrease by half, which is wonderful!! And amongst all this craziness, is a beautiful little girl who is so brave and absolutely amazes me everyday.

Saturday, September 10, 2011

So I am writing this quick post as I make yet another box of gluten free mac and cheese. When my sister in law was visiting from San Antonio, she had her first taste of a box Annie's Homegrown and was quite impressed. She did some shopping at Trader Joes and bought a bunch of boxes of their gluten free brand. FYI- It is just as good if, not better, as Annie's. I love Trader Joes.

Friday, September 9, 2011

Green, blue, pink and yesterday's cast color ended up being bright orange. Claire is in the last week of her serial casting. As I have mentioned, she is an idiopathic toe walker, so this is the treatment before surgery to get her muscle to lengthen. Next week she will have her casts cut and her braces will put fitted. She will have braces for 4-6 weeks. The braces will be solid braces for the first couple of weeks until her ankles strengthen then they will hinge the braces for more maneuverability. The braces force her to walk on her whole foot.

Claire has two speech thearpy sessions per week. One session that is individual and another session is with a group of other spectrum kids. Yesterday, Claire told the new girl, Bree, who is just joining her group that she is getting braces after her casts. Bree responses "cool! I am getting braces for my teeth!" This group of about 5 boys and now 2 girls cracks me up. They are suppose to work on their speech by interacting with peers their age. Well, autistic and spectrum kids have trouble socializing, so you can imagine what these sessions can sometimes be like.

Thursday, September 8, 2011

I created this blog for two reasons only, not that I thought anyone would want to read about my life. First, it would be a great spot for people to be updated on Claire's progress. I initially thought Facebook would be a good forum for updating progress but I found that it isn't. Second, I hope that one day it would be a great resource for other families who have an autistic or spectrum kid with celiac disease.

Did you know 60% of autistic kids including spectrum kids have some sort of GI issues??

"How many more minutes" will be the title of my blog. Why, you might ask? Well, my life revolves around the question of how long everything will take. "How many minutes until I wake up?", "how many minutes until school?", "how many minutes until we eat?". My daughter, Claire, 7 is diagnosed with Pervasive Developmental Disorder-Not otherwise specified and also with Celiac Disease. She also has the diagnoses of macrocephaly (large head), chronic epistaxis (nosebleeds), idopathic toe walking, she has huge reversed mole on her leg, and severe language disorder including stuttering. For there to be less chaos in Claire's head, everything has to be related to time. Though I don't think she has any real clue what time means. Our home is a haven for calendars. Claire is a fully functioning child, goes to regular school and gets good grades.

I am also a mother to 3 year old, Lily. She is the opposite of Claire is almost every aspect. I say, that when Lily was born and growing, I became a first time mom. This is not to disregard all the hard work with Claire, it was just that raising Claire was sooooooo different than raising Lily. Lily did all the textbook stuff, hit all her milestones accordingly. Lily keeps me on my toes, speaks in full sentences, extremely independent, and loves to be the baby of the family. I also say that when Lily was born, Claire came alive. Even to this day, that statement puts a knot in my throat. I don't think Claire would be as functioning as she is today, if it wasn't for her sister. There is a picture of Claire and Lily in their bedroom that I love to stare at. Lily is only weeks old and Claire around 4. They are laying on the bed, and the bridge of Claire's nose is cradled onto Lily's tiny forehead. And she is just breathing in the newness of her sister. Like her senses finally came alive.